Breast Reconstruction: It's OK To Say No

Now that the active part of my breast cancer treatment is finished and my mastectomy scar has healed, several friends have asked when I will start reconstruction of my breast. 

I shrug and tell them that I will meet the surgeon in due course and explore options.  But I'm not in a hurry because I don't think I will follow that route.  I think I will leave my lopsided, scarred chest exactly the way it is.

I've been surprised by how shocked many people are by this response.  It seems that most of my friends didn't even think about whether I would undergo reconstruction.  They try and reassure me, thinking that I'm either afraid of the surgery itself or worried that the end result will not be what I'd hope.  Give her a bit of time, they seem to be thinking, and then she'll see sense. 

But I've had time to think about this.  Yes, I am afraid that the surgery would be a long and painful process.  Yes, I do worry about the end result because it will never be quite the way was before.  But this isn't just a negative 'I can't face any more procedures' kind of response - even if I could wave a wand and have my old breast back I might have to think about it (I have mixed views about breasts these days).  I completely respect women who decide that reconstruction is for them, but I also worry that society and the medical profession have a tendency to simply assume that reconstruction is just the next, inevitable step in the process of treating cancer. 

From my point of view, I am now as healthy as medicine can make me.  Surgery will not affect my chances of cancer recurring one way or the other and my scar has healed up nicely and doesn't need any medical intervention for health reasons.  So why would I undergo more surgery?

To be comfortable in public?  I can understand that a silicon prosthesis might simply not be a practical solution for larger breasted women: it can be heavy and uncomfortable and it's never going to offer a cleavage.  But for me, an A-cup girl, it works really well.  I have the best fitting bra I have ever had, it's comfortable and gives me a great shape and I never had a cleavage anyway.  I admit that it's a fairly solid bra so it limits evening dress a bit but I can live with that.  Even my swimming costume looks good.

So should I do it for my husband?  Well, maybe if he was seriously disturbed by my new shape and didn't find me attractive any more I'd have to give it more thought.  No doubt, if you ask him, he might confess that he'd prefer my old body.  But we're both getting a bit saggy and baggy and padded round the edges in middle age - I'd rather he still had the body he had ten or twenty years ago too but that's okay.  Our scars and extra baggage are reminders of the life we have shared together and that's not a bad thing.

And what about my kids?  We're pretty relaxed about nakedness in my immediate family so inevitably the kids have walked in on me coming out the shower and seen my new shape.  They've got used to it and don't really care one way or the other.  And I can't help feeling that it is a good message for my pre-teen daughter: yes, my body is not conventional but I'm comfortable in it and that's just fine.

So that just leaves me to strip away everything else and take a good long look at myself at the mirror.  I have to ask honestly, am I really happy with the way I look?  Can I live with the scars or will I always feel uncomfortable, however well I disguise them?  For some of us, the answer will be no.  And to them I say, that's just fine - surgery is, I hear, really great and will result in a shape that you can be proud of and enjoy.  Go for it! 

But for others, like me, we'll think we look just fine the way we are.  I don't mind looking in the mirror and seeing my scar.  More than that, I'm proud of it.  It marks a journey that I have made.  When I look at the space where my breast once was, I don't see that I am less, I am reminded that I have learnt more about what matters in my life and the blessings that I had all along but didn't always recognise.  

When the time comes, I will meet the surgeon, get all the information and make a final decision.  But I doubt she'll change my mind and I'm happy that I'm making a good, positive, informed choice for me.

So don't ask me when I will start reconstruction - ask me whether I will reconstruct.  There are good, positive reasons for either answer.  The most important thing is that society and the medical profession remembers that this is the question that needs to be asked first.

This is Me - Going Out

This is me, getting ready for an evening out with friends.

Wig no longer an option as getting too itchy but hair no-where near public scrutiny.  So choose headscarf to go with my nice green dress.

Put on nice green dress.  Realise nice green dress does not look so nice over white cotton T shirt that radiologist insist that I wear next to skin during radiotherapy.  Look through stuff and find black vest top that will not show and is also 100% cotton.  But not white!  Radiologist specified white!!  What will BLACK do to my vulnerable skin???? Decide that this is ridiculous and put on black vest top with nice green dress on top.  Readjust headscarf which is now attractively over one ear showing lots of stubble on other side.

Look in mirror.  Nice green dress is too figure hugging and shows lopsided shape of chest area (cannot wear bra and prosthesis during radiotherapy).  Experiment with pretty scarf around neck to hide flat bit.  Realise that pretty scarf around neck + headscarf = fortune telling gypsy look.  Do not want to spend evening reading people's palms.  Take off pretty scarf.  Experiment with pinning onto black vest the fake cushion boob provided by hospital after operation.  One boob now weirdly high, the other depressingly saggy.  Lovely.  Not.  Plus weirdly high boob fairly obviously....well... a cushion.

Take off nice green dress and headscarf and start over.

Eventually find baggyish top worn over black vest with re-pinned cushion boob and matching headscarf.  All in purple shades so also matches the purple lines drawn on my chest for radiotherapy that show around collarbone.  Look obsessively coordinated.

Drawn in eyebrows and paint liquid eyeliner on top eyelid to compensate for absent lashes.  Realise I haven't used liquid eyeliner since I was teenager.  Look like I have two black eyes.  Can't tell I'm lashless though ;).  Wash off and try again.

Hallelujah!  I am ready to go out.  End up arriving late because husband was not ready.  Seriously???

Why Do I Need Radiotherapy?

One step at a time: that's been my philosophy for getting through my cancer treatment.  My doctors have wisely taken the same approach, giving me just enough information to get through each stage without overloading me with information.

But now that the mastectomy and chemo are over, it is finally time to turn my attention to radiotherapy.  I have been prescribed 25 sessions, so that means going to hospital every week day for five weeks plus an initial week with two preparatory appointment.  That's when they will decide how I will be positioned and mark me with small tattoos so that they can recreate that position exactly for each session.

Last week I met my radiologist and I had various questions for him, starting with - why do I need radiotherapy at all?  After all, the operation removed my entire breast and the infected lymph nodes, then the chemo supposedly killed off any cancer cells that had escaped in my body.  Hormone therapy should hopefully prevent any new cancers, so what is the point of radiotherapy?

First, he explained the criteria for prescribing radiotherapy.  If my tumour had been small and contained in the breast, then the mastectomy would have been enough.  But if the cancer is also in the lymph nodes (yup) or there is more than one tumour (yup) or there is one tumour larger than 5cm (my two tumours had joined to create one 5cm monster so I guess that's another yes) - then radiotherapy is prescribed.

That's because surgery cannot reach all the problem areas.  A mastectomy cannot remove absolutely all breast tissue and there are lymph nodes in places that would be too invasive to reach with a knife.   And in theory chemo should take care of anything left behind by surgery but in practice it isn't 100% effective, particularly around the breast area, possibly because the surgery removes the routes the chemicals need to travel.

So, where will I need radiotherapy?  They will blast areas where localised cancer cells might still be lurking i.e. the chest wall and the lymph nodes hidden behind the sternum and the clavicle.  And finally they will blast the armpit where first-level nodes have already been removed but, unlike surgery, the radiotherapy will be able to reach the second or third level.

If I wasn't yet convinced, the statistics helped me see that it is worth making the trip to hospital every day for six weeks.  Without radiotherapy, there's a 15% chance of localised recurrence.  Radiotherapy reduces that to only 2% after a lumpectomy.  For me, post mastectomy, radiotherapy will reduce my chance to 1%.  Those are odds I like.

And how does radiotherapy work? They will blast me with high energy x-rays in small doses that will break down the DNA in all cells.  Healthy cells have a repair mechanism so will have repaired themselves before the next session.  But abnormal cells and cancer cells don't have this ability, so will be unable to reproduce and will die by the end of the 25 sessions. 

That sounded like a good result but not much fun for my healthy cells.  So my next question was - Won't it hurt?  My radiologist promised that I will feel no pain during the sessions and, in fact, will have no side effects at all until the last couple of weeks.  By then I may get some dryness and redness on the skin but no burning (large breasted women can burn where the skin folds but, as I have had a mastectomy, I should be fine).  There might also be some fatigue towards the end...but not as bad as chemo-exhaustion.

Well okay, but shouldn't I buy some protective creams?  He almost rolled his eyes at this one, clearly he despairs of the advice people receive.  Ignore what everyone says, he pleaded, don't use cream or oils, soap or deodorant.  Just wash with water.  To keep yourself comfortable, avoid wearing your bra or prosthesis if possible and wear white cotton T shirts next to the skin.  I have, of course, been advised to buy a 'wonder cream' that a friend (who survived radiotherapy unscathed) swears by.  I'm hesitating...but I think I'll stick with my radiologist's advice for now.

Finally he explained that I should have four weeks recovery time between the end of chemo and the start of radiotherapy.   But my last question was, can I wait a couple of weeks longer?  You see, I told him, the kids have a week's holiday and I really don't want to come to hospital every day when they are not at school...  He agreed, though the gap couldn't be any longer.  So now we can go on a family holiday during the break and get a week's rest and relaxation before the next phase starts. 

One step at a time.

Same diagnosis...different treatment plan

Recently a friend of mine was diagnosed with breast cancer.  Her diagnosis is remarkably similar to my own: lobular, a large (4-5cm) tumour in one breast, hormone receptive. 

She lives in the Netherlands while I am next door in Belgium.

And yet her treatment plan is radically different from mine.

When I was diagnosed, I thought that the only reason for giving chemo before surgery (neoadjuvant therapy) was to shrink the tumour and so make surgery easier in cases where lumpectomy was an option.  So, when I was told that I would definitely need a mastectomy due to the size of my tumour, it seemed obvious that they would operate as soon as possible and give chemo later.  My chemo is simply intended to mop up any stray cancer cells that might have escaped round my body.

So I was rather surprised to hear that my friend will also definitely need a mastectomy and yet will start with chemo before the operation.   It turns out that there is another reason for neoadjuvant therapy - to keep an eye on whether the tumour is shrinking so that they can tell whether the chemo is working or not.  In my case, my tumour has already been taken out so we don't have the faintest idea whether FEC-T has been effective or not.  Presumably that is why they use a combination of drugs and prescribe a longer period of chemo....because they figure that some of it has to work eventually.

 There doesn't seem to be any definitive research showing that one way is better than the other.  But the interesting thing is that I didn't even know there was another way.  There was no discussion of options when I went into the hospital.  Perhaps this is a good thing because, truthfully, I'm not sure I could have coped with options in those terrible weeks and I probably needed someone to take charge and tell me what was going to happen.

But now we come to another difference in our treatment plans, where experts simply seem to disagree on what is the best option.

I was told that mastectomy with reconstructive surgery was not an option as I will need radiotherapy which causes too many problems with the new breast.

My friend in the Netherlands has been told that this is nonsense, with modern methods the radiotherapy will not cause any problems.

A quick Google seems to suggest that there are experts on both sides of this debate.  And some experts that argue that even if the radiotherapy does damage the new implant, it still produces better cosmetic results to have reconstructive surgery at the same time as the mastectomy and then remove the 'cooked' implant later and replace it.

I can't help wondering if my oncologist should have explained to me that there were other options, even if they weren't offered at my particular hospital.  Would I have switched hospital to benefit from reconstructive surgery at the same time as the mastectomy?  Probably not.  But now that the mastectomy is done, it's too late to even consider it.  I understand that my experts have taken a particular view on this issue and there is evidence to support them.  But if there is also considerable evidence on the other side of the argument, shouldn't they have been obliged to make sure I was aware of that?

I can't really regret the decisions that were made.  Chemo before or chemo after - probably it doesn't matter.  And, truthfully, I'm not sure that I will take the reconstruction road at all, and almost certainly wouldn't have risked problems with a fake breast that'd been over-radiated.  I guess I just feel uncomfortable that they weren't my decisions. 

On the other hand, a little Googling doesn't make me an oncologist.  Is that the point, that I just have to put my trust in the man who has spent years studying this field and is now making these decisions on my behalf? 

I suspect that might have been the best way in those crazy, early days when the diagnosis turned my brain to quivering jelly. But I think I will do my own research and ask more questions before any decisions are made on the next phase of my treatment.  After all, he may be the expert... but it's my body.

Wigged and Boobed: Getting the Prosthesis

After one more trip down to the lovely boutique providing Everything For a Lady with Breast Cancer, I am delighted to announce that I am now fully wigged and boobed.

The wig I bought at the weekend has worked out very well indeed; I've even had compliments for my new hair style from people who don't know about the Cancer.  So I went back this week to pick up my new mammary prosthesis.

Getting the prosthesis didn't take long as there wasn't much choice: apparently I can't get one that sticks to your skin until I've completed all the treatment.  I was, in any case, rather cynical as to whether that actually works - can it really retain it's stickiness?  Imagine the humiliation if it fell off!  But I was reassured that they do work well, especially for someone small breasted like me and with a scar that has healed neatly.

In any case, for now I have a silicon gel prosthesis that slips into a pocket in a mastectomy bra.  The only choice was whether to take one slightly smaller or one slightly larger than my remaining breast.  A no-brainer, I figured.

Then onto the fun part!  I chose new bras, which do need to be a little sturdier than what I usually wear, but don't feel grandma-ish.  And my new swimming costume is super-cute, no-one would ever guess that it is a mastectomy costume.

Finally, I took my new boob out for a test drive.  

Being small breasted has made it relatively easy to disguise the mastectomy over the last few weeks, simply by not wearing a bra and padding out the missing side with a cushion-boob pinned inside baggy clothes.  But the price was that I had almost no shape at all.  So it was great to be able to slip into my old tops again and fill them out properly.  Most of my old wardrobe is wearable again, with the exception of strapless evening wear, and one or two tops might need adjusting as the new bra is quite large and tends to show.

The prosthesis isn't heavy at all, the bras are comfortable, and my 8 year old daughter snuggled in for a cuddle and declared it to be suitably squishy.   After wearing it most of the day, the scar can feel a little uncomfortable but I think that will pass in time.

So all in all, a great success.  And I can't wait to try out my new costume...